– 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 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
experience 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 disease.
Which 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
they 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 to, 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 to 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's 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
overall quality of life, and in some cases, enhancing
their physical functioning.
– And I know, 50% of
people with Parkinson's have some form of depression? – That's a rough estimate, but it's probably close to 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 the depression and the 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 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, like 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 the 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, 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 relive 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 flowing to the brain, it 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. A 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 that, 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 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 exercise, 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, like 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's 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 a 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 supports, 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, is 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, can be signals 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 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 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 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 disease. They're often hidden,
hidden behind a mask 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 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 ♪ ♪ The world is beautiful ♪.
