Parkinson’s disease (PD) is different from person to person. But it’s also different from group to group. Women living with Parkinson’s have different experiences and symptoms than men. Women also may face unique situations, such as worsening of PD symptoms with hormonal changes, shifting roles in and out of the home, and other transitions.
To learn more about the medical experiences of women with PD and how to manage, we spoke with Amie Hiller, MD, MCR, a movement disorder specialist and associate professor of neurology at Oregon Health Sciences University School of Medicine and Director of the Pacific Northwest PADRECC (Parkinson’s Disease Research, Education and Clinical Center) at the Portland Veterans Affairs Medical Center in Portland, Oregon.
The Michael J. Fox Foundation (MJFF): How is Parkinson’s different in women compared to men?
Amie Hiller (AH): It’s different in many ways, including:
- Women are less likely to be diagnosed with Parkinson’s.
- Parkinson’s tends to progress, or change, more slowly over time in women.
- Motor symptoms are different: Women tend to have more tremor, dyskinesia (involuntary movement) and restless legs and less facial expression (facial masking).
- Non-motor symptoms are different, too: Women may have less memory and thinking (cognitive) changes; hallucinations (seeing or hearing things that aren’t there); gut symptoms, like constipation; and sexual changes, like decreased libido or problems with orgasm. However, they may have more mood changes, like anxiety, depression and apathy; fatigue; sleep problems; pain and urinary symptoms, like incontinence or frequency (having to go more often).
- Emotionally and socially, women may have less support, more stress and more self-reported disability. They may also experience more negative self-image, loss of femininity, feelings of not being heard and less sexual intimacy.
But our understanding of this is limited in several ways. Do women really have fewer of certain symptoms? Or do doctors not ask about them? Or do women tend not to talk about or to downplay certain symptoms? There’s also not a great deal of research on these topics. Remember, there was a time, not too long ago, when women weren’t part of research studies! (National Institutes of Health policies in the late 1980s encouraged research involvement of women and this later became regulation.)
MJFF: Is it true that more men than woman have Parkinson’s?
AH: Yes — in general, Parkinson’s affects men one and half times more than woman. This has been shown consistently in many research studies. And women, on average, live longer, so even if they are diagnosed later, it seems we’d still capture fairly accurate numbers. Still, there’s likely delayed and some under-diagnosis of women with Parkinson’s.
MJFF: Why is Parkinson’s more common in men?
AH: It may have to do with estrogen, which is a natural “female” hormone. Estrogen is at higher levels during child-bearing years and decreases around menopause, which is when menstrual cycles stop. The general thought is that estrogen is good for the brain and may help protect from diseases like Parkinson’s. But there are likely a lot of other things that may play a role — other hormones and even lifestyle factors, such as diet, occupational exposures and exercise. We don’t yet have a full explanation for why PD is more common in men. And we don’t yet entirely understand the relationship between estrogen, Parkinson’s and its symptoms.
MJFF: But we do know that hormone changes can impact how a woman experiences Parkinson’s, right? How might menstrual cycles affect PD?
AH: Like most things with Parkinson’s, this is different from person to person. Estrogen (and other hormone) levels fluctuate throughout the menstrual cycle. And that may impact PD symptoms. But stress makes Parkinson’s symptoms worse, too. During the premenstrual phase, you might not sleep as well. During your period, you might feel worn out, because you’re eating differently or a little anemic (low blood count). These physical changes and the stress on your body can make PD symptoms worse. Menstrual cycles also can bring a lot of the same symptoms you might already experience with PD. If you have trouble sleeping or mood changes at baseline, for example, you might notice more during your menstrual cycle.
If your PD symptoms are worse when just before or during your menstrual cycle, talk with your neurologist as well as your primary care doctor or gynecologist. You might consider adjusting Parkinson’s medication during your cycle — adding a little more around that time, for example, to accommodate. But you also might want to think about treating the hormonal changes and menstrual systems themselves. There are many options to regulate hormones, such as birth control pills, intrauterine devices (IUD) and others, and these can help ease symptoms.
One of the challenges is that we don’t have a lot of data on this. Most women living with Parkinson’s are post-menopausal and a smaller subset — maybe 10 to 20 percent — live with early-onset PD, which is diagnosed at age 50 or younger.
Groups like the PD Avengers and the Women’s Parkinson’s Project lead efforts to better understand women’s experiences through data capture and other endeavors.
MJFF: What about pregnancy and Parkinson’s?
AH: Because Parkinson’s is typically diagnosed later in life, this doesn’t come up as often. And that means, unfortunately, we don’t have as much data on it. In general, pregnancy for women with PD seems as safe as it is for women without PD. But about half of women with Parkinson’s experience worsening of PD symptoms during pregnancy. We don’t understand exactly why this happens but, like with worsening during menstrual cycles, it might be related to many factors. Possibilities include: women may reduce or stop some PD medications during pregnancy, medications may be harder to tolerate due to pregnancy-related nausea, higher doses may be needed for weight gain or exercise programs may change. Again, we know stress makes PD symptoms worse and there are often a lot of stresses on the body and daily routines during pregnancy.
With any pregnancy, we try to limit the use of unnecessary or unsafe medications as much as possible to avoid risk to the fetus. When medication is needed for Parkinson’s, levodopa seems the safest and amantadine should be avoided.
Pregnancy requires close collaboration with your neurologist and your obstetrician. If you’re thinking about pregnancy, talk with your physicians ahead of time. This gives the opportunity to maximize or adjust medication before pregnancy. Of note, all women, both with and without PD, should take folic acid when trying to get pregnant to reduce the risk of birth defects. The biggest risk to the fetus is in the first few weeks, when many women might not yet know they’re pregnant.
It’s important to think ahead to delivery, too, and troubleshoot any potential challenges with symptoms, such as stiffness, dyskinesia or dystonia (muscle cramping). These may not get in the way of delivery, but it’s good to have a plan to address them, if needed. Similarly, ask about potential anesthesia (e.g., an epidural) and discuss pros and cons ahead of time with your anesthesiologist, neurologist and obstetrician.
Throughout pregnancy and after delivery, exercise should still be considered an important tool to manage PD symptoms. If needed, work with a physical therapist to stay as active as possible. And be sure to talk with your doctor about how to adjust your PD medications after delivery, especially if you plan to breastfeed. As stated for many of these areas, there is little data on breastfeeding. In a published report of one patient with PD who breastfed while on levodopa, the baby’s levodopa levels were low. It's always best to discuss with your personal physician, but there is data to suggest breastfeeding while on levodopa alone may be safe.
MJFF: How might menopause impact Parkinson’s?
AH: Perimenopause and menopause are the times when estrogen levels start to fall and menstrual cycles become irregular and stop. (This can happen from, on average, age 40 through 55.) Peri- and menopause can cause changes in sleep and cognition, emotional swings, disruptive hot flashes and more. These changes and the stress that comes with them can worsen both motor and non-motor PD symptoms and make them more difficult to manage.
This is, again, a time to work closely with your neurologist and gynecologist. You might adjust medication to target increased PD symptoms, but you also might want to consider treating hormonal changes, too. Hormone replacement therapy (HRT), which replaces the hormones that decrease during menopause, may be a consideration. There are many different options, each of which has potential benefits and side effects. Your doctor can tell you more and direct you to which, if any, may be right for you. And don’t forget about lifestyle factors — eat as well as possible, get regular exercise and optimize your sleep where possible. (You might need a cooler room or bed linens, for example, to manage night sweats.)
MJFF: Women often have many roles — mom, spouse, care partner — and that’s just in the home! How might roles shift with Parkinson’s?
AH: Everyone manages differently, of course. I’ve been struck, personally, by how many women seem to want to be independent in managing their PD. They may not involve their spouse in care or medical appointments, for example. This is my experience, not a research finding. But it’s important for all of us to remember that sometimes, asking for and getting a little help can be beneficial. And it’s not a sign of weakness! You can still take charge while getting support from a team.
Having open conversations about how you feel and how you feel roles shifting may be helpful. These transitions can bring changes in identity and lots of different emotions. Intimacy and physical relationships can change a great deal when one person is affected by illness. The person with PD may experience changes in body image that affect intimacy or physical changes that make having a sexual relationship more difficult. Their partner may feel more like a care partner and less like a romantic partner and may have trouble shifting between these roles. Every couple is different — some may want to shift their sexual relationship to maintain intimacy and connection in new ways. This may require some work, adjustments and creativity. Remember that health care professionals, including mental health and sex therapists, are here to help.
Women with careers outside the home may also go through change related to PD. Even early in disease, multitasking can be a struggle and make some professions more challenging. Flexible work environments may be helpful, where possible, so one can adjust schedules to meet an “off” day or rest a short while when fatigue sets in.
For persons with children in the home, there can be many unique struggles: when to let the children know, how to tell them and how much to tell them. This is an individual decision without a rule book. One of my former patients is a professional artist who wrote a children’s book about PD. She read it to her grandchildren from a very young age to let them know about her PD.
A counselor or therapist can also help if you or family members are struggling or just want some additional support. They are experts at helping people work through and navigate changes. There are also family and couples counselors who can work with the whole care unit. Ask your doctors for recommendations and referrals.
MJFF: Any other tips for navigating life as a woman with Parkinson’s?
AH: Self-care is critical. And that can be hard for women! We’re used to juggling so much and adding Parkinson’s to the mix can make that even tougher. For those who aren’t as good at prioritizing their well-being — those who put everyone else’s needs in front of their own — try to put self-care at the forefront. That will look different for different people, but it could be setting aside time to exercise in the morning, practicing five minutes of mindfulness while you drink your coffee, or joining a support group for women. These can be harder to find, especially for younger woman, but there are many, and growing, options.
For any person with PD, advocating for oneself is important. It is good to be familiar with your symptoms, your medications and which symptoms are most bothersome and why. It is also important to speak up, ask questions and share concerns with your providers so you can, together, optimize your treatment. Remember, too, the care of your PD does not just involve visits to your medical provider every three to six months. It also involves the exercise you hopefully do several days a week, figuring out a good system to take your medications consistently and finding support and community. Every person with PD is different, but PD changes for everyone over time. Those who can adapt and think creatively often seem to weather changes more easily.
The Michael J. Fox Foundation’s Parkinson’s Buddy Network, an online forum to connect with others, ask questions and share experiences, hosts a private group for women with PD. Sign up and request to join the group.