Tag: parkinsons disease

– Hi, and welcome to ParkinsonTV. An educational series that brings you diverse perspectives of Parkinson’s, and its many possible symptoms. Season one focused on the basics of living with Parkinson’s. In season two, we’re exploring an important topic that’s not discussed often enough: mental health. In this, our first episode of season two, we’ll discuss two frequent companions to Parkinson’s: depression and anxiety. (violin music) Joining us is the series creator and neurologist Dr. Bas Bloem, from the Netherlands. Bas and his team started ParkinsonTV in Dutch, and they’ve now released close to 40 episodes that have reached hundreds of thousands of viewers. Bas, it is so nice to have you today. – And it’s a pleasure to be here, Patrice. – Thank you. We are also delighted to introduce our guests, Dr. Roseanne Dobkin, and Bob Pearson. Roseanne is a clinical psychologist and associate professor of psychiatry at the Robert Wood Johnson Medical School at Rutger’s University in New Jersey. Welcome. – Thank you, Patrice. I am honored to be part of this important work. – Thank you so much. And we’re also joined by Bob Pearson. Bob has Parkinson’s, and he’s experienced anxiety and participated in several research studies investigating new treatments. Thank you all for joining us today. It’s such a pleasure to see you, and to learn from you, and to share this with our viewers. And I guess, to you, Bas, first of all, tell us a little bit about your research, and just these very important first symptoms that we’re discussing, depression and anxiety. – Yeah, I think this is a critical season, for ParkinsonTV. We long thought that Parkinson’s was just a motor disease. It’s maybe good for the viewers to know that James Parkinson described the disease based on people he literally saw walking on the street. And if you start to speak to people like Bob, you will hear that there are lots of non-motor symptoms, including depression and anxiety, which are actually very common in patients with Parkinson’s. And I know that you have experienced this firsthand. – Yes I have, Patrice. I think I’ve had Parkinson’s for maybe 20, 25 years, but my first clinical treatment was for general anxiety, not for Parkinson’s. That was about eight years ago. I was misdiagnosed, I think. And the anxiety was pretty severe, I was put on medication for it, and now I’m getting the proper treatment, and it’s made a world of difference to me. – And I know, Roseanne, you treat patients, you see how these symptoms manifest themselves. And it’s not always the same. – Everybody is different. And just like Bob said, oftentimes we will see depression or anxiety present, 5 years, 10 years, 20 years before the onset of the physical symptoms of Parkinson’s disease. This means that people with Parkinson’s have been living with these very distressing non-motor symptoms for quite some time, and they can be very impairing. You know, there isn’t that much of a difference in the specific mood or anxiety symptoms per se, that people with Parkinson’s present with compared to the general population, but the way in which The present fluctuates, it varies. Sometimes the presentation is chronic, sometimes it’s intermittent, sometimes it’s both, so it looks very different person to person. And oftentimes, these mood symptoms get missed because they overlap with some of the physical symptoms of the disease process, and doctors, the healthcare team, people living with Parkinson’s, and their family members, might not recognize, you know, there are two separate phenomena at play that really require attention and treatment. – And I know that just in talking to people, the first thing they usually say is, oh, I remember, like you said, 30 years ago I had this depression, this anxiety. Never, in their mind, realizing that it could be Parkinson’s. Because maybe they didn’t have any of the motor symptoms. And that’s exactly what happened to you. – Sure was, yeah. It’s kind of a baffling disease. And that’s why I’m so glad we have these experts with us today to help explain this to everybody. Because it is treatable. That’s the important message, it’s treatable. – It is. And people need to know, Bas, that these are normal symptoms. I think sometimes people think that it’s just them, but, quite common. – It’s quite common. And, so, two things. One is, many patients who have the disease today can become depressed, or have anxiety. Bob’s example is one where patients have the non-motor symptom, in his case, anxiety, but also frequently depression, as the very first symptom of what later becomes full-blown Parkinson’s. You can’t turn things around; not everybody with depression will later get Parkinson’s. But in hindsight, we now know that depression can be the very first manifestation of what later becomes Parkinson’s. – And it’s so important for people to ask questions, isn’t it? – You have to ask questions. And as Roseanne was already alerting, in order to identify depression and anxiety, you have to speak to people. So that’s why James Parkinson missed the boat when he was just observing people walking on the street. You have to speak to people. And what I always say is, you have to look behind the mask. Patients with Parkinson’s have the mask face, or the poker face, as it’s sometimes called. This is a core motor symptom of the disease. And it complicates matters in two ways. One is, sometimes the mask face is mistaken for depression. So people feel cheerful, but people think they are depressed because they have this lack of facial expression. But in other cases, the depression is missed because you literally have to dig behind the mask and listen to patients and find their depression. – And I know people will learn so much from these episodes. What do you hope comes out of this one, the depression, and anxiety? Because I know you’ve explored so many topics, and you were just telling me that there are so many more. It’s such a complex disease. – Yeah, as we were saying when we were preparing the episodes, the fact that we’ve done 40 episodes in Dutch says everything about Parkinson’s, and what a complex disease it is. And we still keep finding new topics. What I hope that today will achieve is, first and foremost, recognition. Recognition that Parkinson’s is not just a motor disease. It’s a disease with lots of mental health issues, including depression and anxiety. And the second thing is, the moment people, listeners, viewers, see and hear this, don’t just sit it out. But it’s a treatable condition. I’m sure Roseanne will say a lot more about that. It’s a treatable condition. – I was just gonna ask you, I know that you specialize in this, in recognizing this. What are the treatment options? – So, there are several treatment options. And I always like to share that there’s no cookie-cutter approach, there’s no one-size-fits-all, everybody with Parkinson’s is a unique individual. In general, as first-line therapies for depression and anxiety, we may look to anti-depressant medications or anti-anxiety medications. I do a type of psychotherapy called cognitive-behavioral therapy, which really focuses on coping skills, what people are doing or not doing in response to the symptoms and life stressors they’re experiencing, how they’re thinking about themselves, their life, their future, their ability to handle the challenges in front of them, and this type of therapy, cognitive behavioral therapy has a growing evidence base suggesting that it can be very helpful for people with Parkinson’s, with depression and anxiety, not just in terms of alleviating some of those non-motor symptoms, but enhancing their the overall quality of life, and in some cases, enhancing their physical functioning. – And I know, 50% of Do people with Parkinson’s have some form of depression? – That’s a rough estimate, but it’s probably close to the target. And I think one of the interesting issues with both depression and anxiety is that, in Parkinson’s especially, it doesn’t always look like the type of mood disorder or anxiety disorder that’s portrayed on a TV commercial. So there are a lot of people out there that have very distressing symptoms, but maybe they don’t say anything about it, or those symptoms don’t get detected, because they’re not on the super-severe end of the spectrum, but they’re still very impactful. So I think we always have to be on the lookout, not only for severe symptoms, but even symptoms that come and go, but are very distressing, bother us and really change the landscape of the day. – So, one thing, if I may, just to add to the treatment. One thing that I always find very effective is simple dopaminergic therapy. So, the depression in Parkinson’s is sometimes a reaction to just having an illness. You could lose a leg and become depressed. In Parkinson’s, it’s more complex, because the lack of dopamine in the brain can also be, itself, responsible for both depression and anxiety. And treating Parkinson’s symptoms with dopaminergic treatment, levodopa or a dopamine agonist, works in both ways. It corrects the dopamine deficiency and thereby treats the depression and anxiety directly, and people feel better, they can move, they can achieve things again, and thereby feel more cheerful. – And I’m really glad that you brought this up. We want to make sure that the Parkinson’s treatment regimen is optimized. That there aren’t any big misses in that area. Get that under control first, and then layer on additional interventions as needed. And for some people, just getting the Parkinson’s medication right can make a big difference. Other times, more is needed, and it’s not so straightforward. – And we’re going to be talking a lot more about this as we continue, but so insightful, thank you all. We had a chance to speak with Rocco Romano, who also has Parkinson’s. We talked to him about his experience and strategies for coping with depression. Let’s take a look at that now. (violin music) – [Patrice, voiceover] Rocco Romano lost his sense of smell when he was in his 30s. And he also suffered deep depression. But he was shocked to learn, a decade later, he had Parkinson’s disease. – When I heard it from the first doctor, I just, I felt like … I felt like my heart just dropped to the floor. It was awful. It’s like a sudden loss. You’re like, “oh my God, what’s gonna happen to my life?” Well, I found out when I was 43 years old, so that was five years ago. And I had these symptoms, probably, as I said, 15 years beforehand. – [Patrice, voiceover] He also had trouble turning his phone in his hand. – For me, my symptoms are extreme fatigue at times, stiffness of joints and muscles, and slow movement. – [Patrice, voiceover] He says depression is the worst symptom. – Depression is such a shaming symptom or condition. And of recent, I’ve been going through quite a bit of depression. You just kind of withdraw into yourself, and, you know, the worst thing I can do is start to withdraw. – [Patrice, voiceover] Rocco was afraid of his diagnosis at first but now has no fear. He focuses on slowing the progression of the disease. Medication helps. So does mountain biking. Rocco has always been active; he loves getting on his bike and hitting the trails near his house. He believes the high-intensity workout helps relieve symptoms of Parkinson’s and restores the chemical dopamine, which diminishes in Parkinson’s. That’s a chemical that gives us a sense of well-being and a good feeling. – I mean, it’s almost like medicine itself. It really is. And it just helps out so much. I would say, the biggest effect, right after I’m done with exercising, is the depression is almost immediately gone. And it doesn’t resurface until three or four days later. It’s the exercise. Really, that blood flow to the brain is so crucial. – [Patrice, voiceover] But sometimes he’s so drained, he can’t ride. And the cold weather makes his muscles stiffen up. But he got back on that bike recently, and he realizes it’s something he has to do to feel better. – Yeah. Sometimes I don’t wanna do it. – [Patrice, voiceover] Doctors have also changed medicines to help lessen the symptoms of depression, and improve his sleep at night. Rocco says the toughest part was explaining the diagnosis to his three young children. But he laughs when recalling their reaction. – Once I was diagnosed, we pretty much immediately told them. Their reaction was, “Are you going to die?” I said, no, I’m not going to die. And then they said, okay, and then they just went about what they were doing. – [Patrice, voiceover] Rocco says one of the hardest parts about this disease is having to retire early from his job as a technology teacher, a job he loves. – It takes a lot of energy out of you, and at the end of the day, I am completely exhausted. I’ll have to come home and sleep for two to three hours. – [Patrice, voiceover] After he retires in June, he’ll still teach, but in a more personal way. – I wanna be there to help people, and show them a path of being positive, or maybe even exercise, or whatever it might be, that it isn’t the end. – So let’s talk about Rocco’s experience, in what ways his symptoms are typical of someone with Parkinson’s and depression, as well as anxiety. I know, Bob, you have experienced more anxiety, but also bouts of depression. Tell us what you went through and still are going through. – Well, before I was diagnosed, I mentioned that I was already in treatment for anxiety. That time, I thought I was worried about stuff. You know, my family, my situation. I had no idea I had Parkinson’s. So, when I got Parkinson’s, the good news for me was, well, now I know what it is, but then I started learning a little bit, and that it could be bad. Like Rocco, I identified with that feeling of, wow, now what have I got? And that’s where you have to get the intervention of treatment. – And I know we heard Rocco say how down he gets, and that sometimes he feels alone even surrounded by people. It’s not uncommon, is it? – It’s not uncommon at all. And a complicating factor is, for me, sleep problems. I was having fragmented sleep, waking up every 90 minutes, having trouble getting back to sleep. When you don’t have sleep, you can rapidly feel bad. And sleeping pills were not the answer, alcohol is not the answer. But there are good treatments available for this, that we can get into, but you have to realize that it’s the disease. It’s not caused by external factors, like your environment. – Right. And I know that Rocco had expressed, too, his sleeping is horrible, which makes him more depressed, more fatigued. And I know, Roseanne, this is not uncommon. – No, it’s not uncommon at all. And like we were saying earlier on in the episode, we always try to optimize the Parkinson’s medication as a starting point to treating depression and anxiety. Sleep is another area where we really want to optimize when we’re embarking on other treatment approaches. If somebody isn’t getting a good night’s sleep, it’s going to make effective daytime coping that much harder. And we don’t want this to be any harder than it needs to be. – Bas, what about you? What did you learn from Rocco? – A lot of things. First of all, I have seen thousands and thousands of patients, and when I see Rocco, it touches me. The impact on his life, a young man, a young family, beautiful children, devastated by Parkinson’s. The same thing, and it always gives me goosebumps when I see the film, is, he doesn’t sit down, he’s proactive, he starts to exercise. And you beautifully see how it’s not just drugs, but how exercise is a treatment, helps him to regain confidence and to treat his symptoms. I think it’s a very compelling movie. – And I know, sometimes, the medications can cause other symptoms, correct? And I know that happened in Rocco’s case. They were adjusting medications because they were causing worse things for him. – Right. In some of the other episodes of ParkinsonTV, we’ll talk about side effects, like impulse control disorders. Most patients tolerate Parkinson’s pills relatively well, because it corrects something that is missing from their brain. But obviously, there can be side effects, which you have to be aware of. – Roseanne, any advice to people who are, maybe, seeing the symptoms, such as Bob and Rocco, and just the general need for awareness, correct? – Absolutely. And one of the things that I take away from hearing Rocco, and learning about his story, is that one of the very powerful tools that he used to cope with was taking on this proactive approach in his own self-care, and I want everyone who’s listening and watching right now to recognize that we have power. We have control. There are skills, there are techniques, there are tools that you can start using today to manage depression and anxiety, and to live a better life with Parkinson’s. And for Rocco, some of those tools were exercises, really trying to prioritize his social connections with his family. And the other thing that I heard him allude to, which is so important, there were times when he just didn’t feel like exercising. He didn’t have the motivation, he didn’t have the get-up and go, but he did it anyway because he set a goal. And he knew why it would be important to actually get on that mountain bike and go. – Bob, what do you do? What kind of physical exercise? – Well, I used to be a runner. And I felt really good, at that time when I was running. I have problems, now, with my feet, so I get on my spin cycle at home, and I go to the gym. But I love being outside, so walking is very important for me. Set goals and don’t listen to your feelings. That’s a good part of therapy. Cognitive-behavioral therapy. I also have joined support groups. And that’s the socialization, my care partner. We talk about everything. You need that social capital, that safety net. Also, meditation is very important for me. One of my worst symptoms of all is fear. There’s a way out of that. Because fear is a thought. And the average thought lasts for maybe 20 seconds. So if I can identify what’s bothering me, a fearful thought, for example, I can accept that, that I’m having a thought, and I can put it in perspective. – Thank you. Thank you all. We’re looking at hope for the future, Bas. What do you see out there for folks, in terms of treatments and hope and new things coming along? – Well, as we said earlier, recognition is key. So everybody who senses depression, or feelings of anxiety, should go see their physician and be treated. We talked about some of the treatments that are out there today, optimizing dopaminergic treatment, antidepressants, talking to a psychologist, cognitive behavioral therapy, there are new treatments on the horizon, there’s very fascinating work on light therapy for treatment-resistant depression, there’s electroconvulsive therapy. Viewers may remember One Flew Over the Cuckoo’s Nest film, those treatments have now been made much, much more friendly for us. So, for severe depression, there are treatments. I think, overall, the prognosis, if you have depression and anxiety, and you don’t treat it, you make your prognosis, unnecessarily, much, much worse. And conversely, if you treat it, it’s a treatable condition. You improve your future, not just for yourself, but for your whole environment. Your spouse, your family, for everyone. – Roseanne, how about you? There’s so much out there, and so much hope for people. – Absolutely. And I echo everything that Bas just said. Nobody watching had any control over the diagnosis. Everybody has every ounce of control over the coping response. And I just wanna encourage people, it’s a call to action. Go out there, learn new skills, mobilize your support, talk to your friends, talk to your family members, talk to your healthcare team. Figure out how you can think outside the box a little bit, in terms of what new strategies, new approaches you can try, in terms of how you’re structuring your day, how much you’re exercising, how much you’re exposed to the people, places, and things that enable you to feel good about yourself. And let’s get really creative about how we engage with our day, how we engage with our support system, so we can really feel that tremendous sense of satisfaction that’s so healthy for us. And everybody can do this. Everybody can make really targeted changes to optimize their mood. – And I know, Bob, you’ve already done a lot of these things. And you’re a hopeful person. What is your hope for the future? – My hope for the future, number one, is that there’s gonna be a cure for Parkinson’s. It’s out there, as Dr. Bloem has said. We just have to find it. By getting engaged in all these different treatments, and advocacy, looking out for yourself, being your own advocate, but helping others in the Parkinson’s community, and your care partners. It’s a very strong message. And you’ll get a dopamine release out of it, I guarantee you. – And you know, you brought that up, and it is important to be involved, and I know some of our other panelists in our episodes to come have said the exact same thing. I could sit home and wallow, but I would rather be out meeting people, sharing a message of hope, finding support, giving support. Correct? – That’s 100% true, because the more we give, the more we get. And you have to take care of yourself. Get your priorities in order. You’ve got a condition. You have to take care of yourself. Once you start doing that, you can give back to others, and lead a very satisfying and worthwhile life. – And so much of a good message, for so many people to learn from. And, you know, for each of our episodes, we ask our viewers beforehand what questions they have about a topic. And we also pick a selection of questions that are the most often asked. And we wanna share some of those with you right now. Again, these are questions about depression and anxiety from our viewers. “Do the majority of people with Parkinson’s “suffer from depression, anxiety, or both?” and I know, Roseanne, we talked a little bit about this. The percentage could be as high as 50%. Do most people have some form of depression and anxiety? – At some point, you know, the answer is most likely yes. And, again, the type of symptoms they have, how long they last, the way in which they impact them, are going to vary greatly from person to person. But I think it’s so important for everybody to know that if you’re feeling any symptom that you don’t like, that makes you uncomfortable, you know, maybe you’re worried well, maybe you’re what-if-ing every decision that you’re considering, you’re finding yourself avoiding activities in your life rather than embracing them, you’re becoming more isolated, you’re always predicting worst-case scenarios, those are really good red flags that suggest maybe I should talk to somebody about this. – Okay. And our next question, “How do you know if “your partner suffers from depression and anxiety, “or one or the other?” Bas? – It can be difficult, even for a spouse, because it kicks on very gradually. But some of the symptoms that Roseanne was referring to, always seeing the dark scenario, loss of appetite, problems sleeping, always being worrisome, and not being the same person you were once married to, which can signal that something’s going on. And I would always recommend a low threshold, a low bar, to immediately seek advice and expert opinion. – And that support from the spouse is so important. “Can Parkinson’s medications cause depression and anxiety?” – No. If anything, as we talked about earlier, the lack of dopamine in the brain can cause depression, and it can cause anxiety. In fact, we know from people who are treated with dopaminergic medication, and where they experience fluctuations in response to the treatment, not only is, in an off phase, when the medication isn’t working well, are the motor symptoms worse, slower walking, more tremor, but they can coincide with more depression and more anxiety, which then immediately improves after intake of medication. So, medication doesn’t cause the problems, it’s a treatment. (soft violin music) – And that wraps up this episode of Parkinson’s TV, on depression and anxiety. We wanna thank our panelists, Bas, Roseanne, and Bob, for joining us, and sharing their knowledge, experience, and their stories about what is important, and why it is so necessary, to get the support you need. A big thank you to all of you. We also wanna thank Rocco for sharing his perspective and his advice. Any last thoughts, to wrap this up? Bob? – My advice to anybody that’s got a Parkinson’s diagnosis is, get going. Get up. If you have felt like you’ve taken a fall, get up quickly, and get control of your future. – Roseanne? – If you feel something, say something. There’s no need to suffer in silence. There are effective treatments out there. Share with your loved ones, with your healthcare team, what you’re noticing, what you’re experiencing, and let’s talk about it. Let’s get the conversation started. Because only good things will follow. – Bas? – Depression is a part of Parkinson’s. Anxiety is a part of Parkinson’s. You’re not to blame. It’s not your fault. But if you sense the symptoms, seek help and get treated, so you can lead a better life. – Thank you, Bas. We hope these episodes are both engaging and informative for you and your loved ones. And if you have questions or comments, we’d love to hear your feedback in the public comment section, or by private message. Our goal is to bring outstanding care and education to anyone, anywhere, with Parkinson’s disease. And ParkinsonTV is a very important way to do that. To close, let’s hear an overview of the whole episode in 60 seconds, from Bas, in our very first Parkinson’s Minute. (music concludes) – I believe this has been a particularly important episode of Parkinson’s TV. I was personally impressed by Bob’s story, Rocco’s story, and I think we all now realize, depression and anxiety are a real, core part of Parkinson’s disease. They’re often hidden, hidden behind a masked face, hidden behind simple symptoms such as seeing things always on the negative side, or worrying all the time. We’ve heard today that those symptoms can be signs of depression or anxiety. And they are treatable by optimizing the Parkinson’s medication, by speaking to a psychologist, by other types of treatment. I think, for me, this has been an episode of hope, and I hope that the viewers will share that view, that depression, and anxiety, cumbersome as they may be, are treatable symptoms, and when you do it, you will lead a happier and a more meaningful life. ♪ Take a moment, feel the rhythm of life ♪ ♪ It keeps beating, it keeps keeping time ♪ ♪ Every minute, it’s yours and mine, mine, mine ♪ ♪ Be the reason, I’ll be the rhyme ♪ ♪ Listen to the sound and hear the laughter in the air ♪ ♪ Open up your heart, feel the love, love, love, love, love ♪ ♪ ‘Cause the world is beautiful ♪ ♪ The world is beautiful ♪.