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The theme of this year is stigma in movement disorders. And as a podcast, we are contributing with a series of episodes to raise awareness on this topic. Today, we will focus on stigma in Parkinson's disease with a guest who has extensively investigated and published on this topic in recent years. Dr. Indu Subramanian is a movement disorder specialist at UCLA in Los Angeles, in University of California. Hello, Indu, and thank you for joining.
[00:00:49] Dr. Indu Subramanian: Thank you so much, Michele.
[00:00:51] Dr. Michele Matarazzo: So, we have already addressed the stigma in other episodes. So instead of talking of definitions, causes, background and types of stigma, I [00:01:00] wanted this episode to be more pragmatic and see if there is any way we can change things to help people with Parkinson's on a local level, maybe in our clinics or in our family, if that's the case, or maybe our friends, but also on a global scale as Parkinson's specialists and researchers.
To start with, I would like you to comment on the impact of stigma in our patients. How does stigma affect them psychologically and practically?
[00:01:26] Dr. Indu Subramanian: So stigma can make people feel othered, affects their self esteem. There can be a reaction in which people are wondering, were they responsible? There's a shame, sometimes a blame. They can sometimes even have self hate as a consequence.
And then, these sorts of things can lead to depression and anxiety. And sometimes even apathy, the sense that they're just not motivated to do very much. And Also can affect people in terms of their ability to interact with society. So people can get more socially isolated.
And these sort of consequences of social isolation and Parkinson's disease are quite profound as [00:02:00] well.
[00:02:01] Dr. Michele Matarazzo: Yeah that's very true. And actually you were discussing some of the features, Parkinson's disease can manifest in many different ways with a variety of motor and non motor manifestation. Do you think there are certain features either motor or non motor that are more likely to lead to stigma.
[00:02:16] Dr. Indu Subramanian: Absolutely. I think some of the very visible things like drooling perhaps a tremor, dyskinesia, these things can be pretty obvious and can lead to, A felt sense of stigma that people are watching you and noticing something. I think that there's also, a sense, from the get go, because I think people think that it happens in older people, automatically, there's a sense that, you know, "I look like an old person walking down the street. People are going to think I'm drunk." There's something that sort of, othering me from, what everybody else looks like. I think from an embarrassing symptom perspective, when people start to have, the need to to urinate quickly, or, may have freezing and are trying to leave a space and get stuck. I think people then, have these things that happen to them. They don't want to be seen as [00:03:00] somebody who, needs help, or, may have, an urgent need to get the bathroom where they're going to have incontinence and so just won't leave the home.
Because of some of these things. And so I think, there are the visible symptoms that are obvious to all of us that people may think about, but then there's these sort of more background symptoms that people may be affected by. Additionally, you know, I think we both know that, treating Parkinson's is usually treating folks that have a varied aspect of mental health burden, just a baseline.
And so depression, anxiety, people get phobic of being in public of being in tight spaces and going out really and then the apathy. So people, when they already have a sense, that there's, it's difficult to motivate to get out of the home or to keep engaged in social activities. Stigma can really worsen that.
[00:03:46] Dr. Michele Matarazzo: I think you touched some very important points. One of them is the young patients. Somehow it seems like the society, probably the patients, everybody do not think they are allowed to have Parkinson's disease when [00:04:00] they're young, right? And they, at the same time, they still have to carry on with their lives, jobs, families, and everything.
And on top of that, they have Parkinson's disease. And they, feel this self shame they have how do we fight that?
[00:04:16] Dr. Indu Subramanian: Yeah, I think because of the way that we branded this disease I think where we teach it in medical school, where the largely the public sees this as a disease of, older white men, in a wheelchair, that's what people think, from those netter drawings that we might have been educated from.
We really have to rebrand this, I think through public service announcements to say that, folks that are in our age groups can get this people of color women. Young women can get this, and this is not something that's just reserved for, a very old population.
We have ageism in our society too. When a disease is associated with something that happens in older ages, then automatically it's something that we discount, right? You're like, not only are have a disease that makes you other, but you have a disease that's associated with old men.
And so when you're [00:05:00] a young woman and you get this, you feel what did I do to get this? I just don't even see myself fitting in this, perhaps you go to a support group that has old white men, in it and you don't see anyone that looks like you. And then you again, feel other, they're not some role model.
So I think, having the ability to connect people who look like each other that might be having this, so young onset patients or early onset patients like special, support group for them, having a support group specifically for women where they can see each other and voice the concerns that specifically are in their age groups and connect and support each other can be very helpful.
Additionally, I think, there are unique issues in these populations. Women, for example, the psychology of women when they're not able to be caregivers for others when they're not able to take care of their Children or their husbands or their parents, they feel very negative.
They have a negative self image just with being not a good caregiver. They really identify with that caregiver role, perhaps a young onset or early onset [00:06:00] patient, maybe in the middle of their career and really identify as a doctor or a lawyer or, a school teacher. And all of a sudden, they have a disease that may affect their ability to, perform that role and suddenly their identity changes. So we have to really be mindful of identity of roles . And when, when we give this diagnosis, and we're able to see people, we want to be able to support them to identify that stigma is something that they, Likely will feel right that this is a very common reaction and be able to give them social support in the form of either, in their own families, being able to talk about these issues, being able to keep, socially connected and also to give them social support in terms of peers that they see in their own Parkinson's communities that may be, perhaps some years ahead of them who are doing well.
That are still thriving in society that aren't, in this sort of they, they automatically picture after you give them a diagnosis of Parkinson's is something that's going to extrapolate to being disabled in a wheelchair. And that's really [00:07:00] not the reality of most people living in the world with this disease.
[00:07:05] Dr. Michele Matarazzo: Yes, while you were talking, so two follow up questions came to my mind. One of them is, it's not the same thing, the stigma in people recently diagnosed with Parkinson's disease and people who has been having the disease for, let's say, 10 or 15 years. The type of features and the type of sensation that they have, and that may lead to stigma is probably different in different stages of the disease. Is that right?
[00:07:30] Dr. Indu Subramanian: I think so. I think we haven't done a lot of research in this. I think, there's about 50 percent of people with Parkinson's that I think in some studies that are reported to have stigma, I think that number is actually much higher. I think that, the sort of process of, accepting the disease and moving forward obviously when you've first been given this diagnosis, you have a lot of questions.
There's a lot of uncertainty and you really are just trying to figure out how to cope really with that diagnosis at the beginning once people get in a flow. I think once they have their support, I think we [00:08:00] have, transition points throughout the trajectory. Let's say, maybe losing the ability to drive, maybe losing the ability to stay in the home because you have higher care needs these transition points. Are things that we need to support as well. And understanding the psychological impact of losing these independence in some ways, I think, and supporting that again, with the ability to talk about this to help still make the person feel vital.
As an important member of society to take what brings them joy, meaning and purpose and still incorporate that in their lives intentionally is really important.
[00:08:36] Dr. Michele Matarazzo: Great. And I think it is also very complicated from the point, the standpoint of, caregivers friends and relatives of people with Parkinson's. How can us also as doctors help them in their needs, but at the same time make them feel that they're not different from anybody else.
They, they should get rid of that, of the idea that they are they do have a disease, they're still a part of the [00:09:00] society like everybody else. Yeah,
[00:09:02] Dr. Indu Subramanian: it's a balance, right? And I think that, I've been recently talking to some patients who are young women and they their main thing is that they didn't want people to feel sorry for them. They're like, I don't want that pity. I don't want to feel like everyone's trying to help me and, trying to feel sorry for me.
I think there's subtle things that people feel right even in the workplace. Let's say that they're given less tasks. They're not asked to do those cool assignments that they may have loved to do before. And I think, we have to reflect on, that person is still, is a person, right?
Is this full, holistic kind of concept of the psychology. It's not just the tremor. It's not just, the fall risk. It's a whole person with a life and, an identity and who, enjoys, beautiful things and has a connection to family and has lived a life up until that point.
And so for us to just do a, UPDRS and send them out with the pill, which is what a lot of folks think that we do, even though I think we do a lot more than that is I [00:10:00] think, just a piece, a sliver of that whole person. I think in our ever increasing needs as physicians we have, not a lot of time.
We have increased. Issues with documentation and all the other things we have to be doing there's not enough of us as movement docs. I think, engaging the multidisciplinary team and helping support groups that might be local by giving talks by helping to Connect people to each other.
And also, thinking about who else is on our team, it might be a physical therapist is really motivating. It might be even a yoga teacher or a psychologist that might be in your community. That might be able to help engage folks. I think that, though, Talking about this from the get go and really destigmatizing Parkinson's as a society are two things that we really have to intentionally do as physicians.
That's something that we, as neurologists, I think, can do more of, trying to work with media to put out a sense that there are people that are thriving and having those people who are willing to come forward who are thriving with this disease to be a voice, to be seen as people [00:11:00] who are, vital members of society that are 10 years into Parkinson's, that are still doing amazing things.
I think connecting patients to each other, that volunteerism of having somebody, maybe help a newly diagnosed person and say, let me be your Parkinson's buddy or your mentor and we'll walk this walk together. I think those are also very helpful. And then I think having, sometimes the psychologist work with the family as well, whether it's couples counseling or other things to help us to understand, how to really support the person.
Perhaps it's not, doing everything for them, but helping them to do things or. Allowing them to have choices and self agency. I think, patients and people all need to have control over some aspects of their life, even, when they have a tremendous amount of accumulated disability, the choice to have this or that, would you like to go to this museum or that museum, would you like to have this happened today or that happened today, this, class or that class.
I think given choice. is so important to each of us, [00:12:00] right? When all choices are taken away and people just feel passive, I think you feel less human. So to understand how the psychology of that works and how to really, help a person without taking away their personhood, I think is something that we perhaps don't even understand how to do well yet, but this has been studied in other diseases and we just need to, open our mind to what we can do for our own patients living with Parkinson's.
[00:12:25] Dr. Michele Matarazzo: That is great. Thank you very much, Indu, for your inspiring and insightful contribution to this important topic. And as we approach World Movement Disorders Day, let's all take a moment to reflect on how we can help combat stigma, not just in our clinics, but. in the society as a whole. And you were given a lot of examples of that.
So if you found this episode helpful, please share it with your network. Together, we can make a difference. Thank you all for listening. And thank you Indu for joining me for this [00:13:00] special episode.
[00:13:01] Dr. Indu Subramanian: Thank you for having this.