Unmet needs of women with Parkinson's disease: Gaps and controversies

[00:00:45] Dr. Indu Subramanian:
Yes. I think that the COVID pandemic really has shun a light on disparities and care for many populations. And I was also really worried about the population of Parkinson's patients that had been coming into our centers and sometimes doing exercise in groups and things like that.

So I ended up starting this virtual support group right at the beginning of the pandemic. At the beginning, we thought it would be for a month or two, just to connect some local patients. It was on Zoom. And then, 110 episodes later with interviews with thought leaders across the world, and including patient voices, I think we've sort of amassed really sort of the who's who of Parkinson's and the voices that may not have been heard.

And I think we heard from a lot of women in panels. A number of patient voices, the women themselves sort of asking why things hadn't been studied better really sort of formulating ideas of their own sort of trajectory of disease, what mattered to them. Why more focus hadn't been spent on thinking about them and how to help them. And we saw amongst the women living with Parkinson's as well, this sort of beautiful worldwide kind of connection that formed through social media. A number of support groups that were happening more locally in person became online and really opened up to lots and lots of women connecting throughout the planet, honestly, with some really amazing voices and beautiful advocacy. And so it was sort of this energy that was around. And I sort of was listening to some of the interviews and people kept saying, "Somebody needs to write a paper about this so that we can really get all the information in one place and include some patient voices. Our voices need to be heard."

And so I thought, well, I could try to do that. And aligned this sort of dream team of amazing clinicians who are also women living with Parkinson's and Elena Moro, who I think has an amazing voice, who also has been heading up Movement Disorder Society initiatives around women who are clinicians in the space.

And the rest is kind of history, but I think it was sort of this energy, seeing voices that were unheard and trying to be sort of a medium to get those voices heard.
 

[00:02:44] Dr. Sarah Lindstone:
Yeah. I mean, it's amazing because there's such rich content and it's so well organized in this paper that outlines the many, many, many different topics that must've come up in this kind of vast qualitative information that you had. In speaking about voices, you authored the paper with three women patients. And what was that experience like? And did it differ from your usual academic paper writing process?
 

[00:03:08] Dr. Indu Subramanian:
Absolutely. I think that because they were the voices of women, in some ways, the psychosocial aspects were so front and center, sort of what mattered to them, what their voices were in terms of their daily lives and their struggles. And so it really sort of took it from a place of just, here's the data — which we don't have a lot of data around. There's a lot of gaps, a lot of conflicting data just in the basic science world in terms of pharmacological approaches. But really then thinking about women and why they're not getting care. And then understanding it from their perspective was really, I think very eye-opening for me very humbling for me, and really I think put a new sort of spin on how to write papers. And I think there are many other populations that I see gaps in in terms of care for Parkinson's patients. And I think that including the patient voice as part of the dialogue is actually really so important actually makes so much sense. And I don't know why we don't do it more.
 

[00:04:01] Dr. Sarah Lindstone:
Yeah. I mean, obviously I feel very similarly with our Parkinson's Advisory Board and the collaborations that we do in Toronto with patients. And it's something that really adds a very, very important dimension to the work that we're just so accustomed to doing as academics. So I think this work really represents a really nice model about how to do that and identify as the priorities upfront that matter to patients.
 

[00:04:22] Dr. Indu Subramanian:
Yup. And then in the dissemination and also getting the word out, it's just been very natural for them to be engaged and also to target the audiences worldwide, honestly. Everyone's from a different country almost. And we're really representing a global experience. There's a universality of being a woman living on this planet and all the needs of others that we care for, and putting ourselves last that sort of is a message that I think not only is resounding in this paper, as patients who may not be getting care, but also as clinicians and as women who are in medicine that are doing the care.
 

[00:04:56] Dr. Sarah Lindstone:
You have a beautiful figure in the paper, figure one. That's a really nice summary regarding what the literature says are the gender differences in the motor and non-motor symptoms in both the prodromal phase and the clinical phase of Parkinson's. For those of us who may not have had a chance to read the paper yet, could you just summarize what some of those main takeaways are?
 

[00:05:13] Dr. Indu Subramanian:
The figure really highlighted some motor, right? So we have more dyskinesias in women some, more tremor-dominant phenotypes sometimes in women. Additionally, we really spend a whole column on non-motor aspects, which, historically we haven't really focused in treating Parkinson's on non-motor aspects at all.

And then we have an even bigger column on the psychosocial aspects of mental health and the place of those issues. So it is something that I think we highlighted and in terms of the non-motor issues, I think anxiety and depression are more common, fatigue and apathy, pain, certain urogenital symptoms, sleep disturbances seem to be more common in women.

And then in the psychosocial aspects really just spelling it out. I think that this sort of sense of a change in perception of a person and sort of the psychological distress that goes along with it, the health related quality of life issues, are quite magnified in women. At diagnosis, there's this negative sometimes sort of destructive self-image that I think we have an opportunity to hopefully educate around helping.

There's also sometimes a sense of a change in what it means to be a woman, the feminine side of that, the sort of sexual intimacy abilities. And then, really a sense of sometimes hiding symptoms, downplaying them, not really seeking attention, and then women, when they do present, sort of feeling of not being heard. So really thinking about a special subtype in some ways that we need to think around and also the approach when we're counseling people, how to give people a better chance to really seek the care they need and advocate for them from the get-go.

And we've actually been sending this paper around and handing it out because it is open access, now, through the Movement Disorders journal, and we've been excited to be able to literally hand it to our patients who are living with Parkinson's, who are women and using it as a tool for communication with sometimes their healthcare providers. So I think seeing all of this in one place has literally made them feel heard and seen sometimes for the first time.
 

[00:07:07] Dr. Sarah Lindstone:
That's such an excellent point around using it as a clinical tool. I hadn't thought about that. And I think all of you listening should try to get this paper into your, into your clinics and share it with your patients.

That is related to the next question. I was going to ask you, which I found fascinating, and I have to say I hadn't considered before I read the paper is how gender roles socialization impact the symptom reporting, which obviously can affect the ability to make a correct diagnosis in people who maybe have less experience working with Parkinson's. But what I found was fascinating, for example, women prioritize symptoms that affect their ability to organize and strengthen social relationships more than men would, for example. Do you have any additional thoughts around that?
 

[00:07:44] Dr. Indu Subramanian:
It's such a morass when you think about why people are not getting diagnosed. I think that women may not know exactly how to complain about symptoms, and if it's not visible, then sometimes they think it's all in their head. And not only that, but as clinicians, when we think about hysteria, the people that we think of our young women who have these sort of symptoms that are seeming anxiety driven or tremulous or whatever. So I think there is a sort of sense that there has to be motor symptoms that are very tangible for people to actually seek care and get really recognized.

But also, how women internalize the complaints as they come up, I think we tend to minimize. Sometimes we, "Oh, hopefully it'll go away." We'll put it off. We'll put it off. Let me take my son to the dentist or take my husband's mother to her appointment and not really think about ourselves and how much our needs actually need to be met, in terms of interacting with the healthcare provider space.

And I think that when we branded Parkinson's as these images of white men who are motorically declining, who are older, who often are accompanied by a wife who comes in to complain and help give the history... these women are coming in, often alone. They don't have somebody who comes in with them and really put themselves last. And when they hear an answer of no, this is just stress or something , they take that and they go back to their home environments and just live with it honestly, sometimes for years.

And some of the ways that we've been able to look at the data. I mean... some of these diagnoses are missed sometimes for years. Patientsdon't get referred to neurologists. They also don't get referred to movement disorder specialists. So they're really getting this sort of poor level of care across the board.
 

[00:09:18] Dr. Sarah Lindstone:
I was struck by, in the paper, mentioning such a large gender gap in access to DBS surgery. I was very surprised to see those figures. And it sounds as if there's some studies that have shown that it's more around what they're determining is patient preference. What does that mean in this context? Is there a subtext we need to be aware of and counsel women differently in this regard?
 

[00:09:39] Dr. Indu Subramanian:
Absolutely. I think that some part of it is that these advanced therapies are maybe more time intensive, they need a caregiver to bring them in and take care of them during the surgery or, even a pump that might be started or something like that. A lot of women, I think if they find it hard to take time out of their lives to consider these sorts of treatments.

And what we showed us that actually, when they get the treatments, they actually do better. So this is a population that actually is a successful group of patients that do well with surgeries, but even when they're offered , many women tend to just decline for whatever reason. And I don't know if perhaps having something implanted in their bodies may not be that acceptable to them or again, taking the time out, feeling undeserving of some of these expensive technologies and asking providers to get insurance to pay for things and limited resources.

But it's pretty striking and even more so African-American women, for example, are a really interesting niche group who really get very, very little deep brain surgeries. And they tend to end up being institutionalized at higher rates and having less ability to have care for themselves from family.

So some of these intersection populations with, let's say a woman who is black or a woman who's Hispanic or Latinix, or a woman who may be a lesbian, who might be black. I mean, these sort of intersections I think are so important to understand.

And so much of what I've been talking about since looking at this data, is really personalizing care and thinking about the cultural context in which we see people and really meeting them where they are and having dialogues about if they declined the surgery, maybe why? Ask those further questions and then spend the time maybe to educate them and re-explore it, give them more support, maybe providing extra layers of care and support, psychological support. Perhaps talking to other women who have successfully gone through the surgery to talk about where the implant will be, how it will be in their body, and things like that. I think we just have to take the time if we're really gonna act like we're taking care of people across these gender and racial disparity divides.
 

[00:11:41] Dr. Sarah Lindstone:
Also what this paper does well is highlight the vulnerability of single women with Parkinson's. I actually had one in clinic this morning and I thought about the paper. I do need to be aware of some things on the radar that I, to be honest, hadn't, even as a woman clinician, hadn't considered before. And one of the things that was interesting I saw in the paper was this caregiving differences, and that women with PD are twice as likely to have a paid caregiver, just because of these gender roles. Do you have any advice around the single woman patient and are there things that we should be looking for as clinicians are asking people more?
 

[00:12:13] Dr. Indu Subramanian:
Absolutely. So, from this paper, we've been giving these talks to support groups that are women focused throughout the world actually, and even translated our talk into Spanish and met with an amazing Spanish support group out of Spain that has connected women that speak Spanish throughout the world.

And we ended up coming up with 15 practical points for women patients to be knowledgeable about. And those start with education, first of all, about the disease and the trajectory, who it can affect and the motor, non-motor contributions.

It also talks about being your own advocate if you can — when you're going to see a doctor, getting organized, writing down your questions and really maximizing the ability to communicate in an effective way. And having somebody who is engaged early on. And I think we do a disservice to all our patients living with Parkinson's to behave like you can do this alone. And so I think normalizing it, de-stigmatizing it, helping people to understand that who they pick early on in disease and engage with is possibly going to make or break how their trajectory is going to be, not just from the benefits of social connection, but also from this advocacy role.

And I think that many women think it's going to be their husbands. And we really been talking around the fact that, it's probably not going to be their husband. It may be a sister or a daughter or a, another woman, honestly, in their life who also fits that caregiving role more naturally, perhaps. Not to say anything negative about men, but there may be ease of communication with women and especially around things like sexual dysfunction or bladder issues. They're much more likely possibly to talk to another woman who can advocate around these issues for them.

So I think engaging somebody early on who can be your cheerleader rather than, the classic way many patients will feel ashamed of the diagnosis. Sometimes feel a stigma. Hide. Sometimes disconnect from their family, feel that they're a burden on their family, and then become very isolated and then take the entire burden of the disease on themselves and then require the healthcare system to help provide that care or, society to provide that care once they've unfortunately become so isolated. At that point, it's much harder to engage somebody who's been left out of the disease course for 15 years or 20 years. And interestingly, this isn't just in women, but we have to start thinking about this even, for example, around LGBTQ issues. Some gay men also may not have a wife or may have a male partner or may be single. And some of them have to engage their circle of friends or other people in the community.

 Huge percentage of people with Parkinson's living in the world are not affluent white men that we've spent so much time focusing on. We really have to think about who not getting care and how to help those people better equip themselves with social support from diagnosis.
 

[00:14:52] Dr. Sarah Lindstone:
And I think we've all realized, collectively the last two years, and especially around work that you've already published about the importance of connection and community in coping with any chronic illness, regardless if you're male or female or whatever differentiators you might have. And so perhaps this kind of speaks to a broader goal of being more proactive in that regard — upfront, rather than waiting for the problem to happen, identifying issues before they happen and creating a network around you that is supportive.
 

[00:15:22] Dr. Indu Subramanian:
Absolutely.
 

[00:15:23] Dr. Sarah Lindstone:
I'm going to change gears a little bit. I'd be remiss if I didn't ask you questions around women's issues in neurology that talk about hormones, which is where all the papers seem to go for any gender topic when it comes to medicine, and it's nice how you laid out in the figure the different stages of how hormones are developing at different times.

And there was some text written around a clinical model, which might involve neurologist collaborative gynecologists. And I have to say in my fellowship, certainly I did not learn about Levadopa in pregnancy. It's just not something that you weren't to think of a lot of the time based on the model that you've already described, how we tend to picture Parkinson's.

So do you have experience working with this area? Like what could a clinical model look just for those of us who want to open a practice in this area, or take on an area of specialization in a sub interest perhaps?
 

[00:16:08] Dr. Indu Subramanian:
Absolutely. Great question. So I think that some of these models are starting to exist and Annelien Oosterbaan, who's my coauthor, who just had her fourth child being pregnant with Parkinson's, and is a gynecologist herself, is a beautiful example of somebody who I think has seen a need, has the knowledge base and is trying to align with the group in the Netherlands, who is trying to actually do just what we're talking about.

So my understanding is that Professor Post and some of Bas Bloem's group are actually trying to create a center for young or early onset PD . And thinking about the issues that are specifically in these populations: employability, how to keep people working and feeling meaning and purpose when they get a diagnosis that's life changing like this at a pretty crucial earning potential stage in their life. Additionally, in the child rearing years or early family life, we're diagnosing women younger and younger across the world who are thinking about having babies and perhaps dealing with fertility issues or pre pregnancy counseling. And how can we align these sorts of resources, since many of us only have one or two of these that may come along in a year. We're not seeing this day in day out. How can we align these resources in a smart way, create a Parkinson's pregnancy registry, just like we have in epilepsy and other disorders. And I think with online resources, that should be quite doable.

And then I think this center is actually engaging OB GYNs as part of their treatment model for these early onset Parkinson's patients. And I think that many clinicians have a special interest in this field because they may have a family member who had this, or saw the one patient that changed their life. And then want to give good resource and support and help to these folks. And I think that it makes sense to engage people who do this day in and day out with easy questions: Does hormone replacement therapy change symptoms and help people going through perimenopausal timeframes with Parkinson's? Does certain types of bone density checks and also then treating bone issues, does that make sense in certain age groups or perimenopausal women? I don't think we have much data in many of these things. The pregnancy registry is another relatively low-hanging fruit that I think Dr. Oosterbaan is working on actively to support and fund.

And then another one is: when people start to develop issues premenstrually, this is one week in four for some of our patients who are living with Parkinson's and 25% of their days are spent feeling not so well.

You and I believe in sometimes wellness strategies, maybe detailing a little bit of a extra nap in their schedule, or maybe a massage or warm bath every day for that week. Or something extra, just to plan and put in the calendar, knowing that they may not feel so well. Or maybe even allowing them to take some extra Levadopa. But I think using perhaps some apps that could also track not just the motor diary, but the point in their periods when this happened so that they can visually see and plan and communicate with their physicians or physical therapists or whoever, to help them plan some extra care for themselves to get through that time, if we know that that is a risky time for them, just like we would a migraine patient.

These are things that I think we know to be true in other neurological disorders and other medical issues, right? Why is it that this is such a farfetched thought in Parkinson's disease? Actually makes a lot of sense when you lay it out like this.
 

[00:19:29] Dr. Sarah Lindstone:
I wanted to ask you about wellness, of course, and how you see wellness interventions overlapping with the needs of women who have Parkinson's. And what about men? Are they the same? Do you think they're unique? Are they different?
 

[00:19:40] Dr. Indu Subramanian:
I love that question because this is why I honestly do the work that I do, is that I really do think that proactive lifestyle choices from diagnosis, or even if you're at risk for getting Parkinson's now that we have these ways to predict who may, with this percentage of prediction , get Parkinson's in the next five to 10 years, what do you do with people that are in these sort of spaces?

 Wellness for me is not getting on a bike for 30 minutes and getting your heart rate up. It's really sort of the complete package of, who are you? What brings you joy and meaning as a woman, who's young who looks like us? And what do we enjoy doing for exercise? What fills our tea cup from a social standpoint? It's going to be very different than a white affluent man who has access to a gym, maybe who's going to get on a treadmill. That's not my happy place. I know what I like to do. It's not practical to prescribe, a treadmill intervention or a bike intervention for me. It's really going to be more in the yoga space. It's Pilates or something else for me. Getting together with my girlfriends and getting our nails done. Not to make it so sort of gender specific, but I think meeting people where they are culturally is so important.

And even in the mind body space, there are other ways that people can feel like they're tapping into that space. It could be prayer. It could be getting out in nature, gardening for some people and just spending time disconnected from their devices with the sun on their face and the breeze, at the beach or something like that, where they really are disconnecting, getting into this quiet sort of space.

 We have to sort of think about the components, and social connection is definitely one of those, diet, exercise, sleep ... these sorts of things, and really understand what is teachable and doable for patients given their busy lifestyles as moms. It's not going to be practical to sign up somebody for an hour, a day in a gym that's two hours away from them. They're not going to do that. And in fact, they may feel badly and ashamed that they can't do that. And then it actually, you've made it harder and more self-negativity because of trying to help somebody. So I think contextualizing wellness, helping people to understand that they have control in some ways around the outcomes of this chronic disease, and that we're going to be there to help them along with a team approach of people, not just us as movement specialists, but another group of cheerleaders along with them. They need to do their part in finding a cheerleader and advocate in their own lives and think outside of the box of just who they happened to be married to.

And then I think educating and empowering women to even get together and get their voices heard. There's just a beautiful energy that I've really been sensing around this group experience with even thinking outside the box of connecting with each other mentorship in support groups.

So having women that are a little bit farther along in their disease trajectory, walking alongside of another woman who may have been newly diagnosed, to help them with this timeframe. Buddies, people checking in with each other, real sisterhood of people that really have connected very beautifully throughout the world now.

And so I think we can engage tele-health, these sort of virtual modalities to connect people in ways that we never could. So I think even though we've outlined a number of gaps and a number of controversies and conflicting data. I hope that we can work together with this paper and as a society of folks that really are passionate about this disease and the people who are living with it throughout the world, and even the unmet populations that I think were so needing a new voice and a new lens to treat them around, to really think about this as a framework to think about low-hanging things that we can each teach even in a patient visit. And I think as you mentioned, these are sorts of things that now you're thinking when you see that woman a bit differently. And we're doing the same, just seeing this all laid out.

We're sort of hearing women in different ways, hearing about how their disease was missed or delayed, how that diagnosis affected them, who they have in their lives, where they get support, what really nourishes them. And we're trying to help them along their way with a bit of a different lens.

And I think that's all we can really try to do with uncovering some of this. And then obviously there's a lot of research as well that needs to be done.
 

[00:23:35] Dr. Sarah Lindstone:
There's so much in there to unpack. There's so many different things I'd like to ask you, but I think that's a really beautiful place to end. I think this conversation has really brought to the fore some of these issues that people have seen, but maybe weren't explicitly aware of.

And what I'm hoping also, specifically, is trainees hearing this .... This is entering the curricula at the medical school level, not only in neurology, but across the board in medicine. And these are really, really relevant issues that need to evolve and adapt as our healthcare system is evolving and adapting and how we care for, especially in neurological patients.

So I really applaud you for this paper. It was a really interesting read and a very useful tool going forward. So thank you so much for all of your work.
 

[00:24:13] Dr. Indu Subramanian:
Thank you. One last point on the trainees and the future being bright in our field, as a co-chair of the Membership Committee of the Movement Disorder Society, I've just been excited to see the number of women and young women that are going into our field, not just physicians, but also allied health care professionals. And I think when you, as a woman, see a woman, there's a connection there. And I think that when we are expanding, ever expanding, hopefully, the pipeline of clinicians-to-be, to reflect really the people that are not being served, it's going to, I think, innately change the dialogue.

And I think we just have to let the sense of what really makes sense and what matters come to the surface. And I applaud the Movement Disorders journal for allowing us to bring this forward in the way that we did. But there are many ways to also represent other racial disparities, young patients with Parkinson's... there's a number of other communities, LGBTQ as well, that there's been papers around. So, thank you so much for the opportunity to talk about this.
 

[00:25:09] Dr. Sarah Lindstone:
Wonderful. Thank you.