In February, the American Parkinson Disease Association (APDA) Northwest chapter hosted a panel discussion on gender differences in PD. The webinar featured a panel of people with PD that included a neurologist, activist, writer, and podcaster. The panel discussed how the effectiveness of PD treatment varies based on sex and gender, and the value in researching tailored treatment plans to men and women.
According to the panelists, both sex and gender have a powerful influence in the symptoms of PD and the response to the treatment. There is also a significant psychosocial impact on quality of life and how you look for the best possible care. Additionally, symptoms are always changing. Not only is the disease progressive, but people also age, which brings up new symptoms. It can be difficult to decipher if it is PD or other factors such as age-related issues like menopause.
The panel stressed that if women are experiencing symptoms that they are noticing are unusual or out of place, they should address it with their doctor. It is important to be organized before going to the doctor because the visits with neurologists are often quite short. The panel recommends sending emails to the doctors ahead of the appointments, so that when the appointment starts, the doctor already has a clear idea of what the needs are. It is important to be proactive in terms when communicating with your doctors.
The moderator of the webinar referred to a recently-published article in the journal “Movement Disorders” titled “Unmet Needs of Women Living with Parkinson’s Disease: Gaps and Controversies.” You can find the article’s abstract here: (there’s a cost for the full article)
For a recording of this webinar, please see this APDA Northwest YouTube webpage:
This webinar utilized a question-and-answer format. See my notes below of the February 23th webinar.
Regards,
Joëlle Kuehn
“Gender differences in PD” – Webinar Notes
Speakers:
- Dr. Maria De Leon, neurologist, person with PD
- Kat Hill, artist/activist, person with PD
- Michael Franich, writer, person with PD
- Larry Gifford, podcaster, person with PD
Moderator: Shannon Anderson, physician assistant, OHSU, Portland, Oregon
Webinar Host: APDA Northwest
Webinar Date: February 23, 2022
Summary by: Joëlle Kuehn, Stanford Parkinson’s Community Outreach
Note these definitions:
Sex: different biological and physiological characteristics
Gender: one’s innermost concept of self
Question: Can you speak to a time where having the symptoms of PD challenged you to redefine how you view yourself as a spouse, husband, or father?
Answer (by Larry): The key for me is understanding that it isn’t going away. How I feel about it isn’t going to affect it being in my life, so I might as well embrace and leverage it to my advantage as much as I possibly can so I can live a better life. It doesn’t need to be about everything I do, I still have a full career and still have my son and my wife. My wife and I have to communicate differently now. We’re both communicators by trade, and we had a groove after 20 years, and now I’m reading her mind and I don’t understand it anymore. I take things a lot more literal than we used to, so subtleties now escape me. We had to sit down and have honest conversations about how PD is affecting the way we communicate. At work, I have to negotiate what I can do to contribute to the office on an ongoing basis. That has changed year after year, and they are working with me so I can continue to work but only have to do the things that I am capable of doing.
Question: Relationship dynamics and your identity within that relationship are challenged at times by the diagnosis. When you received the diagnosis of PD, did that challenge your relationship or the dynamic that you and your wife share with one another?
Answer (by Michael): That was particularly difficult. I planned on retiring a month after I received a diagnosis and it was a complete reversal and change of plans. I spent a lot of time outdoors, and suddenly I was very uncertain about what the future held and what kind of changes I would have to make in my life. My wife started doing research and we found APDA and Davis Phinney workshops. I started getting information and making small changes in my life which gave me the confidence to make bigger changes. I discovered gyms and changed my diet and turned things around so that I look now at PD as a part-time job, not my life. I will continue doing the things I love doing as much as I can. When I can’t ride a 2 wheel bike anymore, I’ll ride a 3 wheel.
Question: What are some of the simple suggestions you might have for someone trying to find a PD community?
Answer (by Michael): You have to take things one step at a time. The most important thing is having this support network so that when you have questions or issues you can go and get something answered. Understanding that each person on the team adds their own focus and you can’t expect them to connect all the dots. I like to write, so one of the things I do at least once a year is make a big summary of where I’m at and how all these other things I’m doing have helped, especially in terms of acupuncture, and seeing a counselor. I have a broad network of support services. I don’t use them all the time but if there is an issue they are there for me and it keeps me going.
Question: Oftentimes as a neurologist, you’re the first person who gets added to someone’s team. How do sex and gender influence your care? Do you take sex and gender into account right from the start as you are performing your clinical interview or thinking about treatment options?
Answer (by Maria): For a long time, we didn’t think that PD had gender differences. When it came to my PD patients, for a long time I didn’t consider gender because most of them were older, so we’re not in reproductive years and planning to have kids. The hormone, reproductive and social status was something that I was used to considering in my younger migraine or seizure patients. It all changed when I suddenly developed symptoms in my late 30s, I was a young mom and practitioner. I started noticing that there were big changes with my menstrual cycle that were occuring, and my menstrual cycle was making my PD symptoms worse. As a neurologist, I am familiar that hormones play an integral part in those diseases and how we manage it, so this is how my research and women initiative PD began. We asked women around the world if they had different symptoms and when they did, we started looking into it. Now when we look into women, gender plays a role. Women and men are so different, and women don’t participate as much in research. We don’t have a lot of data that says the medicines are going to work differently in men and women. I think now we’re having this opportunity to have some input as to is there really a difference, not just hormones but does gender and sex play a definite role in how we diagnose, treat, and deal with disease. I think it does, but we still have a long way to go.
Question: Can you talk about your experience coming up with a treatment plan, i.e. the decision to start medications, finding the right pill, etc?
Answer (by Kat): When I was first diagnosed, I was still having regular menstrual cycles, but I was about to enter perimenopause. I was having trouble sifting out what was going on, so I had had PD symptoms like so many of us for so many years but wrote it off as other things, especially around my cycles. I might have more of a twitchy feeling. Because there are changes when we go from periods to perimenopause to menopause, it is hard to sift out what really is going on with our bodies, and to add a neurologic challenge or some of those symptoms, it’s hard to know what is going on. I was also in denial, even though PD runs in my family. For me, I had to first accept that PD was here to stay. Then, I have to tease out what I was ready to take on in terms of medicine and treating my symptoms, and if I could manage my perimenopausal symptoms first. We are not just our neurology, or just our gastrointestinal or reproductive health, we are one whole package. It’s complicated, and we have specialists because there is a lot to each area. If women are experiencing symptoms that they are noticing are different, we have to start talking about it in the exam rooms. My hope today is that women hear us. Historically it was scary to include women in research if they were of reproductive age, but we are learning ways that we can do that so we have to get involved and raise our voices.
Answer (by Larry): The Parkinson’s Foundation did a presentation on women and PD four years ago. Someone said that levodopa doesn’t work when they are menstruating, and others agreed. If a man had to take a medicine that didn’t work one week of the month, we’d have 17 different ways to fix that. I wasn’t even aware this was an issue. It should be discussed in the doctor’s office or the neurologist’s office.
Answer (by Maria): I often say I think we need to treat PD like we do catamenial seizures and migraines. We should treat with a prophylactic or higher dose during, before, after the period because so many of us don’t respond or have breakthrough symptoms. We’ve been focusing on women, but that’s not to say that men don’t have their own issues and hormonal differences. There are differences in presentation and in the way the treatment responds between men and women. We need to better tailor specifically for gender for men, and for women based on their symptoms because it’s not one and the same. PD is complex enough, and then if you try to put all men and all women in one lump, you’re not going to get treatment that focuses on the individual. We need to take time to try to find those differences and those subtypes.
Question: Do you have advice on getting comfortable bringing up the issues, especially given that neurology return appointments are usually only 20-40 minutes? Have there been certain questions or symptoms that have been tough to bring up with the neurologist, or that PD may have made difficult to talk about?
Answer (by Michael): Doctors visits are a nightmare because they are so short. I try to be very organized in terms of notes. I can send emails to my doctors ahead of the appointments, and I can attach lengthy word documents if I need to explain things. Before I go into a meeting, the doctor already has a pretty clear idea of what the issues are and what we’re trying to talk about. In terms of subject matter, across the board it’s been easy to talk to people about things. What is difficult sometimes is in the short amount of time, I want to know more, I want to understand exactly what the mechanisms are that are functioning in my brain, and there isn’t time to discuss that. The knowledge helps me get over the daily humps and challenges and I make my adjustments. Being proactive in terms of communicating with my doctors is really essential.
Answer (by Larry): I fear bringing some things up to my doctor. I was having trouble with my urinary tract, and I ultimately brought it up so I now also have a urologist. I have a hard time bringing up uncomfortable topics such as intimacy, or topics where I feel that I am too young for that, but it’s happening because of PD, so sometimes I’ll email my doctor after I leave the appointment.
Answer (by Maria): It’s understandable. It’s hard to bring up personal instances. Sometimes you don’t bring something up if you feel like you’re managing. If it’s not really broken, and you’re managing, or you don’t feel like there is a solution, you don’t want to bring it up, but you should. Things are always changing. Not only is the disease progressive, but we also age, which brings up new symptoms. Sometimes it’s hard to decide if it’s PD or other factors such as other conditions or age-related issues like menopause. You have to have a doctor to count on and trust to communicate with and you have to be willing to change and adapt treatment to move forward.
Question: A paper just came out in Movement Disorders Journal titled “Unmet needs of women living with PD: gaps and controversies”, and one of the quotes that stuck with me is that women report less sexual dysfunction than men, but this may be due to an underreporting by women who may be less likely to talk about these sensitive eisuses or not being asked by their mainly male providers. Do your providers ask you about sex and intimicy, and by contrast, do you bring this up with your neurologist in your routine follow ups?
Answer (by Kat): I have never been asked about sexual function in the appointment. I spent a lot of time talking about reproductive health with my patients. In every annual exam I talked about sexual function, in the hopes to start giving women permission to start talking about sexual health. Our sexual health is an integral part of our health. For me, a diagnosis of anxiety and depression predated my PD diagnosis. In retrospect, they probably were PD. I know that we treat anxiety and depression often with medicines that can really impact our ability to achieve orgasms, and I think that women sexual health is not talked about enough, and I think because women’s orgasms are a little less overt than a male’s orgasm, it may take more work, awareness, and uncomfortable discussions in an exam room and partnership. It has to be brought up, we have to encourage our PD doctors, friends and allies to be talking about it, thinking about it, and to know it’s really common. If we don’t talk about it we can’t get help with it if we need it.
Answer (by Larry): The conversation with your partner is really important because intercourse isn’t the only love language you’ll have. If that isn’t an option there are other avenues, there are many ways to express yourself and be intimate. Some of it is making sure that you have space for just you two. I do get asked about my sexual health on a sheet of paper before I see a neurologist, but they’ve never had a follow up or conversation about it.
Answer (by Michael): One of things that is important is to keep searching and researching, because there are answers out there. Communication has to change and adapt over time. Your relationship evolves and develops and communication is the glue that helps you make adjustments and hold everything together.
Question: If you could have one question that science could answer along gender/sex implications in PD, what would it be?
Answer (by Maria): Is there a timing with hormones? Is there a time where replacement and increase/decrease makes a difference? If so, when is the time that you take action?
Answer (by Larry): Women on my podcast have said that during birth and shortly thereafter, they don’t need any levodopa because their natural hormones kick in and take over. What is in that mix of hormones during childbirth that may be a secret to us to help solve this issue?
Answer (by Michael): What is the connection between emotions/mood/impact of pain and my motor symptoms? I can look perfectly normal and suddenly if I lay down I may have shaking issues. I want to know the mechanics of what is going on in terms of my body, and work on definite solutions to deal with that.
Answer (by Kat): Are there treatments better suited to women vs. men? Are there differences and are we missing an opportunity to tailor treatment by not looking at that specifically?
Tips from the panel:
- Keep a journal
- Understand what we used to do we can’t do anymore, so you have to be creative and open to new ways of living and loving
- Find a little joy in every day
- Connect with other people
- Be kind
- You have to keep being yourself
- Have goals in the short term and long term: Personal, family, relation with spouse, things you want to do
- Still have dreams of things you want to do
- Be open to new ways to do things
- Laugh a lot